“It has been determined that the use of a lower extremity functional neuromuscular stimulation device (the device I want) in the home setting as a technique to restore nerve function and provide ambulation as investigative therefore we are unable to approve the NESS L300… says Blue Cross.

So that’s the end for my dream of getting the Bioness foot drop system. Of course I can always purchase it without insurance, but it costs $6,000 bucks. AGH!!!

The letter arrived a few days ago, but I couldn’t collect my thoughts well enough to write about it. I really thought they might pay for it because they do cover DME (durable medical equipment). Nevertheless they won’t this time. I already appealed the decision and was turned down. I managed to console and convince myself that life with Thelma (my scooter) isn’t that bad. That is, as long as a ramp is provided.

I would also like to share that I was approved for the drug AMPYRA®. It is a medication developed as a treatment to improve walking in people with multiple sclerosis. It’s actually the first pill of its kind. To be honest I don’t know if that’s good or bad. Maybe this will be my best option now. I’ve had few friends comment that I seemed to be getting around better with my walker, so I’m going to count that as a postive result so far.

Despite my set back my spirit is not broken. Oh, don’t get me wrong I was devastated after seeing the rejection. Reading that letter was like being slapped in the face. I had put so much hope in it. But still I’m moving on. At least, that is…Thelma and I.

Check out an interesting assistive device that only cost 200. It is a Hip Flexior Assistive device (HFAD). Some have made positive comments about it. Maybe you could evaluate it for yourself. It’s not the same as the L300 but could have possibilities

I agree with Linda B.
If you have not already done so, do not leave any stones unturned.
You deserve that device and I would keep persevering all resources until they either got tired of me or finally knew that you deserved it. !!
It takes alot to fight the system and maybe even win…but if you have it in you …..go, go, go !!

That really stinks Nicole. With your doctors help, I would keep appealing that decision from the insurance company. They are known for denying coverage hoping that people just give up. Even if they would agree to pay a portion of the cost of the neuromuscular stimulation device, it’s sure better than nothing.

I also wonder about some of the medications doctors prescribe…if they’ve never taken any themselves, they don’t have a clue. Nicole, weren’t you taking Gilenya? How is that working for you? My neurologist wants me to try it.

So sorry Nicole, As if having MS isn’t enough to deal with. We really need socialized medicine. Insurance companies have too much say in our healthcare. I am glad you were approved for the drug but you had so much hope resting on this. What a letdown. Keep on fighting the good fight and I hope everything will work out for you.

Sorry abt the NESS 300. I was on AMPRYA for abt 6 months & I didn’t see any improvement so I went off it. Am on GILENYA now, & I don’t see any difference w/it either. At $12,150.00 for a 28 day supply it will also be ending shortly….no diff other than SOMEONE is paying for it. My scooter is my lifesaver also….we don’t go anywhere w/o it! I will be eligible (medicare) next june for another mobility device & am considering a mech wheelchair since I am only medicare eligible every 5 yrs for MediCare paid device. I am unsure about a WC since I use my scooter handles for balance (toilet, etc) & I love that basket! Keep on trying & Elaine…get a new neurologist!

I am hoping that you had doctors letters upon letters stating that you needed that devise. I would keep writing them until they got tired of you and gave you what you needed but then I love a good fight.

I am not sure where you are located but my dad builds ramps for those who needs them. The goup he belongs to is called Tex-Ramp here in Texas and people are refered to them by the Texas Department of Disability and Aging. If you have one of those where you are you maybe able to talk to them about a ramp’s team. Here it is the place you go to get food stamps etc….

I love reading your stuff and you are such an encouragment. Please stay tough.

Nicole,
Did you check with the MS society? They have a good grant program that could help fund the purchase of DME. They helped me purchase a stair lift a couple of years ago. Also the MS Foundation has a similar program. Please do not give up! There is always another option!!!!! And @ Elaine McGowens — I agree with Nicole – time for a new doctor!

Sorry to hear it, Nicole. Did you actually get a chance to try out the NESS? If it worked well for you in a trial, then you could start figuring out how to pay for it. I was referred to one doctor, then another, then another, then a physical therapist so I could try it out. In the end they said my problem is not foot drop and therefore it would not help me.

I’m sure you’ll let us know how the Ampyra works for you. Best of luck.

I am sorry you won’t get your NESS L300 using Blue Cross. Have you thought about writing the company and showing them this blog and your sponsorship? Try to pitch it to them as publicity if the product works. It’s not like you are the only patient using a wheelchair by necessity, and you are tapped into their potential market.

I am just thinking about all of our expensive medications. Many of the pharmaceutical companies have programs to make sure those who need their goods get them.

So sorry you received such disappointing news Nicole. Elaine, I so glad you are seeking a new neuro. I personally have more aches with my MS than actual pain but I know a TON of people who are in pain and your doc is just wrong! I love it when doc who don’t have MS tell us how we should feel. Very frustrating but such is the way with the weirdness that is MS….

Nicole, I am sorry for your moments of feeling rejected or at least not understood. What a lesson for us all to try to be more tolerant of others. I looked at that device, also and even called the company to see if they needed any volunteers to collect more data. I was fitted early on for a foot brace to help with foot drop. I didn’t end up getting it because I didn’t think I was bad enough to warrant it. When I returned it the doctor treated me like I was crazy. I wish he would have asked me how I was feeling. The MS diagnosis was so new, I didn’t know what I needed or didn’t need, I was searching. The “searching” for answers is the piece I wish others could understand.

I don’t know. I asked him about the cooling vest that has the “coils” in the shirt and pants. He said that wouldn’t do my any good. It was just a nuisance. It hot and humid in the south and I did have the ice packs before that melted after a few hours. I didn’t like that one, but this one was a newer kind. I also asked him if I has progressed from RRMS since I am having more problems and he said he didn’t know. Go figure. I will be tranferring to Dr. Mary Hughes.

It’s times like those when I want to direct the doctors to patientslikeme.com to then explain why so many MS patients report painful symptoms. There is a value to being able to put some numbers behind the frequently reported symptoms.